I've had a ton of things running through my mind lately... just haven't written them down. This is probably why my my thoughts won't shut off.
In December I started having pain in the middle of my chest and back which quickly turned into having a very hard time breathing . This was the first time I was truly scared Lupus was going to kill me. I started thinking about writing letters to the people I loved, how much I would miss my friends and my nieces. I was also so tired at this point I realized I was actually to tired to care if I died or not. Dr Got me on some prednisone and after I had more strength I decided I needed to finish my Living Will and give my Dr's copies..... that was a surreal experience.
I am still dealing with these symptoms and I'm still home on disability. The Dr added Imuran about four months ago (which is a heavy immunosuppressant) to try and get these symptoms under control, I am still waiting for results.. Right before I started the prednisone I had lost most of the weight I gained while on prednisone before and within 8 weeks of being on it I gained 20 lbs. I saw the scale at the Dr last week and I almost had a heart attack! I had just started feeling like myself again. I felt attractive and I liked the way I was looking in my clothes, I was getting compliments again on how I looked and I even got into my skinny pants! My friends keep telling me I am still beautiful and I look fine and although I appreciate that very much and it's great to hear, I want to scream when I get told that because that isn't the point. I don't like, I hate looking this way, I hate the my face is swollen and I have neck fat! I don't want pictures taken of me because it doesn't even look like me. I feel I am looking at a stranger.
I'm still waiting (after 12 months) for The Department of Human Services to let me know if I qualify for services for school/job re-training since I won't be going back to nursing. I had to call my caseworkers supervisor-AGAIN, to complain about the calls I am NOT getting back. The long term disability company says within the next few months I will have to apply for SSDI and if I qualify I should get a check for all the months I have already been on long term disability and then I they would get a cut of that, Which makes no sense to me. They have hired me free legal council to make sure this get done quickly. Which I am sure the lawyers goal is to get my long term company what they want. So, I will have to call SSDI and learn more about this situation. But if I get SSDI, I wonder how I will live, the money is so insultingly low, can see people are terrified of getting sick. Sick people have enough to worry about, they don't need to worry about being treated like an annoyance.
As I have reached my 35th year of life (which I never expected to do honestly) I think about all these things I never thought would be a reality for me. Such as, aging parents, sickness, bills, retirement, living wills, insane healthcare premiums, the death of some of my deepest dreams and the hope of a future that can still be good.
Being sick has also taught me some things. I say "screw it" alot more, lol.... I want to enjoy things when I can and I don't think I worry as much, possibly because I am more apathetic and partly because I know things are going be what they are going be. To kill myself with worry isn't making it any better (at least I am trying not to worry as much). I am also willing to take more chances.
But I'm concerned that the hope I used to have for life, love and a future is dying. I feel more Jaded about things and I don't want to. I know part of this is growth, it's another chapter in my life that I need to learn from and grow from. But I have this unsettled part of me that knows I am not where I am supposed to be yet. I want to have hope again that I will fall in love and that the few dreams I have left are still possible.
So many people have things much worse than I do. I am not a fool, I realize my blessing. In the midst of what I am going through I know without God I would never make it. Even though I am still on disability it's enough, with some extra. My old car finally went to be with its car maker and I had to get another one and God is providing for that also. I can hear music, which brings me peace, I can watch a baseball game, I can feed myself, I can bath myself, I have money for food, I have the most amazing friends a person can have, I can read, I can watch a movie, I have a bed to sleep in and a roof over my head... The list could go on and on and that is what I try to hold onto when I don't know if I am going be able make it or I don't know if I want to.